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Sunday, June 17, 2012

*This picture is from Disneyland a couple weeks ago.Jaxson is home! He came home yesterday. Thursday before his surgery he was gagging and retching like crazy! His bicarb has been super low, and we've had to increase it to an exorbitant amount to keep his level stable. Friday night the retching finally stopped and his lab Saturday morning was ok, so home we came.

I love our ENT, but we are going to have to have a nice long chat at our follow up. His tracheal malaysia is moderate, which I already knew. She wants to do a big airway surgery, where they take cartilidge from ribs and fix the airway. Then she wants to decannulate him!

I love her zest, but she is getting way to gung ho! His airway is NOT why we trached Jax, his lungs are. Bipap and cpap do not work for him. He actually desatted more on the bipap than regular oxygen. But his PH was getting really bad, and that is why we trached him. Fixing his airway is not going to help this problem.

I've just emailed his neuro because I'm still concerned that his diet ratio is too high. His color is absolutely horrid. His face and lips are grey. I keep checking his sats to make sure he is ok. The are not horrible, but he looks horrible. His lips and secretions are really dry, even though we upped his water by 200 cc's! I think he is still too ketotic. I'm just praying we don't have to re-admit him to fix this problem!

I'm trying to decide if I want to go strictly to facebook. Blog traffic has been really low, so I wonder if its worth being in two places at once!

I'm not sure if I can do that though. So many people have emailed me, finding Jax blog through googling PICU, or other key words. I hate to take this resource away! We'll do some heavy duty thinking about it this week!

I hope you keep the blog. I found it through someone else's blog, I don't even remember where, but I've read it regularly for many months. I love the pictures of Arina, she is so cute, and I pray for Jax and your family. It might sound wierd because I've never met or talked with any of you, but I really care about your family and enjoy reading the updates!Irene

What are you under on Facebook? I'm on there all the time, but I do come check almost daily for updates on Jax and your family. For me it wouldn't matter as long as I have some way to follow. :) Not that you know me at all, but I have a special place in my heart for Jax!Lisa (from Illinois)

So glad Jaxson is home! Even though I don't comment every time, I visit your blog very often and would be sad if you stopped posting, however I know that life is busy so if facebook saves you some time then I guess that's a good thing :-)

I also am an anonymous reader....don't have your facebook but do read your blog. I like to keep up with Jaxson & Arina. Am praying for Jax's health to be kepton a level keel. Love to see his smile. Please keep writing for those of us who like to keep up with your blog.

Please dont get rid of the blog! I don't have a facebook and never plan on getting one! It's awfully frustrating when a lot of companies and sites almost FORCE you to use facebook in order to use their sites and I am just not okay with the invasion of privacy and i feel no need to have a facebook! However I I always visit your blog(and several others I found because of your blog) to see how Jax and Arina and the big boys are doing, to pray and and check in.

Keep blogging. I think it is a healthy release. Different from FB and who cares how many read. Write for you and write for the few, on some days, that come and check in. It is enough. and, Jax and Arina's for that matter, story, is one that needs to be told and shared. FB can't accomplish that. it just can't.

love your blog Lacey and we check in even though we see you on fb also.

Junior got way too ketotic at times. He would start to hyperventilate and sweat profusely. I started carrying juice around with me everywhere because it happened frequently. Junior's doc always told us he was the only kid he has ever dealt with who was had trouble with ketones going too high. We lowered his ratio and still had issues but it wasn't as bad. Do you do the daily urine tests? With Junior we would see the darkest color in less then 2 seconds. Good luck.

Read about our adoption journey here!

Jaxsons story

About Me

Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects,pulmonary hypertension,severe reflux,sleep apnea, and a hypoxic brain injury that resulted in severe siezures.This is his journey.